UNITED SPINAL’S ACCESSIBILITY SERVICES HELPS

MUSEUMS TO BECOME DISABILITY-INCLUSIVE

Matt Castelluccio -- Vice President of Community Support for United Spinal -- said thousands of museums could benefit from duplicating NYSCI’s immersive exhibit, which explores technology while approaching disability as an everyday part of life.

He especially praised a sit-ski experience that replicated the Paralympic sport.

In a time trial run, kids could virtually slalom between the flags and down the giant slope.

“All these kids were asking my boys about mobility because they saw me using a wheelchair,” said Matt.

“My boys get it, but I think about hundreds of people that day who left the exhibit with an appreciation and understanding of life with a disability.”

And not just that day.

“Think about every day the museum is open.

How many people who might not have direct experience with disability – how they walk away with such a positive experience.”

 

UNITED SPINAL’S ACCESSIBILITY SERVICES HELPS

MUSEUMS TO BECOME DISABILITY-INCLUSIVE

“One of the things that has emerged is quiet rooms or spaces, where a person on the spectrum can avoid the roar of the crowd,” says Kleo King, the Senior Director of Accessibility Operations for United Spinal’s Accessibility Services and a NYSCI board member.

Braille signage and wayfinding are a must, as well as infrared hearing loops at ticket counters, concessions, and more.

At the disability-inclusive Human Plus exhibit, visitors can virtually sit-ski the Alps.

Dana Schloss, Associate Vice President of Exhibits at NYSCI, notes that the building was built six decades ago for the World’s Fair, long before the ADA was enacted.

However, NYSCI leadership constantly develops programming and facilities that include people with a full range of disabilities.

“We have redone a lot of the museum in the last six years.

We’re thinking of inclusivity in all exhibits and all parts of the building,” she said.

“We think about Universal Design all the time. 

We know that ADA compliance is the beginning. NYSCI aims to offer an inclusive design for all.”

UNITED SPINAL’S ACCESSIBILITY SERVICES HELPS

MUSEUMS TO BECOME DISABILITY-INCLUSIVE

Accessibility Services teamed up with the Buffalo Bills to build a stadium that exceeds the Americans with Disabilities Act requirements.

Today, Accessibility Services is working on the first-ever soccer-specific stadium in New York City.

The 25,000-seat stadium for the New York City FC Major League Soccer team is projected to open in 2027.

Designed by HOK, it is next to Citi Field and part of a mixed-use project featuring thousands of affordable housing units.

When the ADA was enacted in 1990, most public facilities first considered access for wheelchair users.

However, Accessibility Services has always addressed compliance and innovative solutions to create a more inclusive environment for all people with disabilities.

UNITED SPINAL’S ACCESSIBILITY SERVICES HELPS

MUSEUMS TO BECOME DISABILITY-INCLUSIVE

“The Hall of Science is very conscientious about accessibility,” says Kleo King.

She is the Senior Director of Accessibility Operations for United Spinal’s Accessibility Services and a NYSCI board member.

“When the Hall of Science gets funding for capital upgrades, they never say, ‘We are doing this because we have to comply.’

Instead, it’s a very upfront, ‘we want to upgrade for better access and inclusion.’”

One of Accessibility Services’ larger projects is at the same MTA subway stop as the Flushing Meadows-Corona Park grounds that host the NYSCI facility.

Citi Field, home of the New York Mets and other events that take advantage of its 40,000-plus seats, opened in 2009 to replace Shea Stadium.

Accessibility Services consulted with famed stadium architectural firm Populous to gather information from a full range of people with disabilities, design seating in all price ranges and vantage points in the $850,000 ballpark, and more.

UNITED SPINAL’S ACCESSIBILITY SERVICES HELPS

MUSEUMS TO BECOME DISABILITY-INCLUSIVE

“Most kids don’t get to hop in a wheelchair and experience how to navigate in it. It breaks down the stigmas,” said Matt Castelluccio -- Vice President of Community Support for United Spinal -- about Human Plus’s wheelchair exhibit.

“I was also impressed that it wasn’t just a tiny, temporary exhibit like some places do to observe a disability awareness month.

This full-scale, immersive exhibit presents disability and adaptations as part of the bigger picture of science.”

Matt sent photos of the disability-inclusive exhibit to fellow advocates at United Spinal, which is how he discovered that his coworker Kleo King helped make it happen.

 

UNITED SPINAL’S ACCESSIBILITY SERVICES HELPS

MUSEUMS TO BECOME DISABILITY-INCLUSIVE

Matthew Castelluccio was interested in an outing with his wife Elaine and twin 12-year-old sons Dominic and RJ for Veterans Day when he settled on the New York Hall of Science.

While there, the family came upon Human Plus, an exhibit on disability and adaptive technology.

“My kids grew up knowing me as a wheelchair user,” says Matt, Vice President of Community Support for United Spinal.

“They are familiar with adaptations and my mobility.

But it was mind-blowing to come across a technology- and disability-related exhibit.”

The exhibit features a white cane navigation pathway demonstrating low-vision mobility.

It also offers an auditory experience featuring the pulse of music to demonstrate how people experience music without fully hearing it.

There are also prosthetic exhibits, and visitors can design their own wheelchairs.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

RESOURCES:

• Canadian Spinal Research Organization, opens in a new windowcsro.com

• FES Center, opens in a new windowfescenter.org

• Neurotech Network, opens in a new windowneurotechnetwork.org

• North American SCI Consortium, opens in a new windownasciconsortium.org

• On My Feet Again: My Journey Out of the Wheelchair Using Neurotechnology, by Jennifer French, available at most online booksellers. https://www.amazon.com/My-Feet-Again-Wheelchair-Neurotechnology/dp/0988234203 

• Spinal Cord Series and Cases journal, opens in a new windownature.com/scsandc

• Spinal Cord journal, opens in a new windownature.com/sc

• Unite 2 Fight Paralysis, opens in a new windowu2fp.org

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

7. We can support fundraising efforts to secure research dollars.

Learn more about the SCI Mobility Lab, located at the Toronto Rehabilitation Institute’s KITE Research Institute, at 

https://sites.google.com/view/scimoblab/home

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

6. We can advocate and move research along at a faster pace. 

Rather than wasting time investigating every nuance, the research can take what we need and move on to the next step.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

5. We can disseminate results so others learn about the latest research and help advocate for policy change, or implementation of new treatments/therapies.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

4. We can help interpret results.

A well-designed study means the results would be meaningful and applicable.

Whether it’s an early-stage study that tells us which direction to focus on, or late-stage research where we can take something and apply it to practice, even negative results are successful because they tell us what not to do.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

3. We can aid with research design and implementation so that the project is feasible and researchers can collect the data they need.

We can identify flaws in a research design that could lead to lost, missing or unreported data.

A well-designed study would make recruitment/retention/compliance less challenging. This can be the difference between a successful study and a failure — particularly when developing devices or products that align with needs.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

2. We can assist with recruitment of participants in studies, which is something many scientists struggle with. An interesting study on a relevant topic with potential to benefit the participant sells itself and can spread like wildfire through our community.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, says there are seven ways incorporating the lived experience of people with SCI makes research better:

1. We add relevancy, helping to define research questions.

Our presence ensures research is focused in areas of importance to us and that it addresses a need or gap in care or service or explores a novel treatment or therapy that leads to neurorecovery. 

NASCIC and the SCI Alliance are made up of multiple stakeholders, including people with lived experience of SCI whose mandate is to set priorities for research.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

“People with SCI are experts in our own right by virtue of our lived experience. 

What we have to say matters and can directly influence the direction of research priorities, as well as how projects are designed and administered,” says Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab. 

“I recognize the dual role and unique perspective I bring as a person with lived experience and the value of that in producing high quality research that reflects the priorities and needs of the SCI community.”

Kaiser says when people with SCI drive research, they focus on reduction and treatment of secondary complications, improvements to quality of life and accessibility as well as finding a cure for paralysis.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Much has changed in the 10 years since Anita Kaiser, a doctoral candidate at the University of Toronto and a research trainee in the SCI Mobility Lab, first entered graduate school.

Then, she received pushback from her advisors who feared her C6-7 complete SCI would bias her data collection and analyses of that data. 

But now, “Research has been slowly shifting to include individuals with lived experience of a specific illness/disease/condition in the decision-making process from start to finish,” she says.

Kaiser said this positive shift is an important step forward because building a strong partnership between the SCI and research communities can enhance the quality of the research and improve outcomes.

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Jeff Welden, a C3 quad from Long Island, New York, agrees. 

“I’m on a community advisory board developing a brain-machine interface,” he says.

“The CAB’s brainstorming and troubleshooting forges a relationship where the project’s team manages advanced planning rather than corrective reaction. 

Utilizing the skills we have acquired as natural problem solvers is a surefire way to improve result efficacy, community acceptance, available usefulness and impact of the project’s result.”

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Jen French, vice president of the North American SCI Consortium and executive director of the Neurotech Network, says the $6.3 billion 21st Century Cures Act, enacted in 2016 and allocating $4.8 billion to the National Institutes of Health for precision medicine and biomedical research, helped shift the model from old-guard exclusionary research to present-day end-user input from the ground up. 

Pharmaceutical companies were among the first to embrace the concept of participation by people for whom the products and treatments were designed because there is a financial gain in avoiding expensive trials that fall apart from lack of enrollees.

“When you design a trial, if it is not people-based, it has a higher probability of failure,” says French. 

“Embedding the voice of experience can totally change the way therapies, devices and delivery of biologics is done. It’s about understanding the way we live our lives.”

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Jennifer French wrote the book on what it’s like to participate in a clinical trial. Called On My Feet Again, the 2012 publication includes her experience of testing an implanted neuro-prosthetic system that enables her to stand. 

French, a C6-7 quad, is vice president of the North American SCI Consortium and executive director of the Neurotech Network.

“When you think about how smart phones were designed, they have a full division of experts focused on the user,” says French, who lives in St. Petersburg, Florida.

“Before anything is done, they gather input from the people who are going to use the finished product. 

Contrast that with traditional medical research, where they rarely talk to the end user until clinical trials.”

RESEARCH IS BETTER

WHEN PEOPLE WITH SCI HELP DESIGN IT

Dennis Bourbeau believes that including people with SCI in the research enterprise, along with asking them to assist defining the problems and parameters for successful solutions, is key to achieving research and clinical breakthroughs.

“The community of people living with SCI is savvy, motivated and well-organized,” he says. 

“Funding agencies and regulatory institutions are actively seeking their input and encouraging researchers to include individuals with SCI as important stakeholders, which helps to incentivize the researchers. 

I think that researchers should see more examples of how an inclusive research model is successful and be given the expectation of adopting this research model if they plan to conduct translational work.” 

Translational work describes projects intended to actually benefit real people, rather than satisfy a scientific curiosity.